Aside from my vision troubles, where I only have about 50% normal vision, the two symptoms that cause me the most grief are sleep paralysis and headaches.

It seems like everyday I get at least one very painful headache( a level 8 or higher out of 10) and the only thing that seems to break them is diluadud, 4 mliagrams, 2 tabs at a time. Although this seems to take the pain from an 8 to a 4, the headache never goes away. The headaches started exactly the same time my vision loss started, and as my vision loss got worse, so did the headaches. My RX for the 4mg dilaudid says I can take it evey 4 hours for pain, I dont do so for fear that it will lose its effectiveness, since dilaudid is a rather strong narcotic, I dont want to: A. end up addicted or physiclly dependent on it and B. I dont want the only ting that seems to work to lose its effectiveness because I use it frequently. I was put on a hypertemsion drug called Vallepran or something like that in the hopes that the headaces will not be so intense and will be less frequent. I have been on this med for about a week and so far it has done nothing for me. I have never had hadaches in my life until my vision loss started and my blood pressure is fairly normal(120/70). Does anyone else with MS get headaches and if so, what have you found that works?

As far as the sleep paralysis goes, it always attacks me just as I am drifting off to sleep. I feel like I am falling asleep but then I get jolted awake but I am unable to move at all, eyes, hands, feet anything, I try screaming or yelling but I cant do a thing. All the while this is happening I am aware of my surroundings, like if I have the TV on, I can hear it. It is very frightening and causes severe anxiety. Ever since mt vision loss has started, I have had these episodes everty night, In fact, I am so scared to go to sleep that I am up usually most of the night and only sleep after my body is so exhusted that it cant stay awake any longer, I really need my sleep if I am to get better, but these episodes make it next to impossible for me to get any sleep. In fact it is now 5am and I have not slept at all tonight. I am supposed to be haivng a sleep study done soon to see if they can pinpoint what is going on. Does anyone have anything similar and if so, what do you do to cope with it?

Thanks for listening and any info you can share will be so very helpful, I would be forever gratefull for any advice at all on either or both of these symptoms.

Hi terry,
Sorry to hear about your symptoms,have you been dx'd with ms?I have migranes with pressure and pain behind the eyes and take amitripaline,never goes completely away,but eases and I can function.Vision probs will cause headaches,have you seen an eye doc? I also have a weird sleeping sensation,,not sure its the same as you,but its more like an out of body thing,,my body is asleep but my mind is awake and I try to move or talk or open my eyes but can't,,its weird and happens frequently.I don't do anything for it,,just got used to it I guess.Hope today finds you well,Dessell

Headaches and migraines aren't typical of MS, however, the ratio of people with migraines is higher in those with MS than in the general population. I don't have problems with headaches myself, but quite a few board members do and could probably advise you better than I could.

As for sleep paralysis, I've never heard it associated to MS, but it could be. It's a rather rare occurance that can happen to just about anyone in the general population. The last I heard about it, the causes (and therefore the cures) to it are fairly nebulous. However, there might have been progresses done since then, so be sure to mention it to your neurologist.

It sounds as though you are having Migraines. they cause sleep disturbance and I know a friend of mine describes the same "paralysis feeling". you have. Dilaudid id a VERY powerful narcotic and hard to kick if you use it a lot. Thre a many different drugs out there for this problem. I hope you find out what is best for you and do it.....Kahlia

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I have seen many things BUT the most terrible thing I have ever seen was the lack of compassion for another.....................Kahlia

Hi,
I have been dxed with MS and the headaches came on only when the eye problems which made my doctor test for ms started> My doctor tends to tjink that it is ms related, but I am looking for some kind of med that will just take these things away. As far as dilaudid, it doesnt take the headache away completely, but t does "break" it from a level 8 or 9 on the pain scale to a level 4 or 5, which is much easier to live with.

As far as the sleep paralysis, I havent heard of it being a typical ms symptom, but i tend to think that it is some how related as it gets worse when i have an acute attack of ms symptoms, these are not the only symptoms I have, I also have tingling and numbness in both hands up to the elbows, loss of vision, weakness, stiffness and pain in my lower legs, loss of vision, bladder spasms with incontinence and loss of balance. In fact my balance has gotten so bad that I fell and broke a rib on my left side saturday and am now having trouble breathing because of the pain. I guess I am just going to stay in bed until these attacks go away so I dont hurt myself.

Any Ideas on the headaches and sleep paralysis will be appreciated and thanks to all those who replied.

MSterday-
I had similar symptoms as you and found that the sleep paralysis and the jerking awake were simply brought on by all my stress and exhaustion about my other symptoms. You're fairly new to this, right? I haven't been dx'ed, have been to several specialists,(including MS specialists) several years and MRI's (of head and spine) later and no findings. Sort of a relief, but frustrating nonetheless.

My doctor explained that since I wasn't getting adequate sleep, my body was falling immediately into the REM form of deep sleep and then when I would wake up from the stress of my situation (or the myoclonic jerks I was also having,) my brain would still be dreaming while my body was awake. I can so relate to your fear of going to sleep-I had this as well, and finally had to realize that the fear itself was what was waking me and causing the sleep paralysis. It is a viscious cycle. I was also afraid to use sleep meds because I felt like I was having apnea attacks and would stop breathing altogether. I used to make my husband watch me sleep I was so terrified.

Your vision symptoms do sound like migraines, and you can have loss of vision and paralysis with these as well.

My sleep problems went away after a few weeks, once I got a little adjusted to the new dysfunctional me, lol. I still stress out, but now I'm recognizing that it only worsens my symptoms, so I try to talk myself down whenever I can.

About three and a half years ago I became unable to move my arms, legs, hands, feet at the end of a physical therapy session. I was in an office in the hospital, so I was taken down to the ER. The doctor had an MRI done immediately, since he felt I had suffered a stroke - I was 49. My brain was great. After about 2 hours I was able to begin moving my body. He told me to see a neurologist because MS can often present with what had happened to me. It isn't connected to sleep for me. It just happens with no warning about every 8 months. Terrifying and has lasted as long as 37 hours. That time my speech was halted. When I spoke I was very loud and sounded retarded. I have many of the symptoms of MS, except no lesions. I keep thinking I'll find someone, maybe even a doctor, who has a clue as to what is going on. If anyone has any hints, I would really appreciate it.

Terry,
I don't know how the vision problems could be related... but I have a lot of trouble with sleep paralysis myself. Is your paralysis ever accompanied by a nightmare? I tend to wake up from nightmares paralyzed... and also have the awful sensation that something is sitting on my chest... and all sorts of other very irrational fears that are actually rather typical of sleep paralysis. I also have headaches about every day, but I hadn't considered the two related. I've been referred to a neurologist for the sleep paralysis, but I have yet to make an appointment. I don't feel that it is frequent enough to be treated... but when it happens, it's bad. Sometimes I even hallucinate upon waking. It is absolutely terrifying, I know, but they say that it's completely benign... considering your other symptoms though, I think you should talk to your doctor.

I can't even tell you how much I was relieved in a way to hear someone describe exactly what I've been trying to tell the neurologist about for over a year. I'm having a sleep study this week and I've had an EEG to look for seizure activity. I KNOW EXACTLY HOW YOU FEEL!!!! It happens when I'm drifting off to sleep. Sometimes I feel like I stop breathing too. I jolt myself awake and this can happen for hours at night until I finally fall asleep.

I have noticed a small pattern with it (not always though) and that's: if I'm over-tired or have had caffine late in the day. This weekend I had it pretty bad because I'm trying to get moved into a new place and put some things in storage. My boyfriend did most of the work but it still pushe dme over the edge!

My visual problems also seem to be related. I have nystagmus (jerking vision) and it seems like it'll go nuts as I'm trying to fall asleep. I'll see stars behind my eyes, sometimes strobe lights and then BOOM! I jerk awake.

Hi Terry
I too have terriable headaches everyday usally getting up around the 8 pain mark at some stage during the day. I have had this symptom for 7 years and to this day have not found any drug appart from going into hospital and getting intravenius morphine or pethadine.
I can fully sympathise with you on this matter as it has takin control of alot of my life being not able to cope with the simplest tasks as the pain is so dehabilitating. I now spend alot of time trying to sleep to get relief, if I do sleep when I wake up it is still the same as it was when I went to sleep but it gives me a break for a short while.
I know that this will not be possiable for you as you have sleep problems I just thought I would share with you what I feel gives me a little relief.
I am going through the tests for ms at the moment and it seems to be a long process for me. But the medical profession can only do what they are able to going on our test results and for headache relief it seems to be an elimination process of which drugs work. I have tried nearly every drug available ranging from anti depressents, valium, epeliptic drugs, migraine relief, hypertension, narcotics and sinus meds without success.
Sorry that I can not be of any help I just thought I would share my story with you.
Lee-Anne

I can't even tell you how much I was relieved in a way to hear someone describe exactly what I've been trying to tell the neurologist about for over a year. I'm having a sleep study this week and I've had an EEG to look for seizure activity. I KNOW EXACTLY HOW YOU FEEL!!!! It happens when I'm drifting off to sleep. Sometimes I feel like I stop breathing too. I jolt myself awake and this can happen for hours at night until I finally fall asleep.

I have noticed a small pattern with it (not always though) and that's: if I'm over-tired or have had caffine late in the day. This weekend I had it pretty bad because I'm trying to get moved into a new place and put some things in storage. My boyfriend did most of the work but it still pushe dme over the edge!

My visual problems also seem to be related. I have nystagmus (jerking vision) and it seems like it'll go nuts as I'm trying to fall asleep. I'll see stars behind my eyes, sometimes strobe lights and then BOOM! I jerk awake.

Sunshine,
I have the jerking of the eyes also,,really bad when I try to go to sleep,feels like I am watching cars or a train go by.I am wondering if that would cause my migraines.
Wish you all well,Dessell

Dessel,
I'm inclined to think it might be linked to migraine too. I'm not sure though. It's so annoying, the nystagmus. It's my most disturbing and persistent symptom. Nothing seems to work except acupuncture for me.

Sunshine,
Hope you are well,,I have never been told I had nystagmus,,but this has gone on for years.Its getting worse with me,I used to never notice it until I laid down and closed my eyes,,now I notice it when reading or trying to focus on one thing or a spot on the wall.Have you noticed any changes in yours?I did'nt know if it gets worse over time or not.
Dessell

When I was first diagnosed in 1997, I had it occasionally. I would be reading or something and my eyes would jerk. Now I have it most of the time and at certain times it gets worse, to the point where I feel dizzy and nauseous and my balance is off. I sometimes take myclazine and that helps. I'm also using acupuncture and that has really been helping. But, more or less, it's been fairly constant over the past 2 years.